Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Monday, July 02, 2007

Autism – My Politics

I am aware of politics surrounding autism. I am aware of them. I’m not exactly sure what the politics are and the premise surrounding each angle, but I am aware of their existence. I have read a little bit about chelation, some about the genetics of autism, and a little bit on thimerisol. I have read a little, and I have moved on.

I have my own politics concerning autism. Neighborhood politics if you will.

My son is on the autism spectrum, and I’m willing to bet that around 50% of my readers read this blog to read about our experiences with autism and with how autism touches our lives (perhaps how life touches our autism at times?). I have my own politics in regards to autism because of my son. I’m not seeking a cure for my son’s autism, just as I am not seeking a cure for my diabetes, or my daughter’s. My politics focus more on the challenges that autism provides us on a daily basis. My politics are singular, and somewhat community based in nature.

How do I keep a child that has very little concept of personal safety, safe? How do I reinforce stranger danger to a child that thinks of every stranger as a new best friend? How do I instill fear without killing the joy? How do I manage behaviors in a way that is respectful of my son and his feelings but also respectful of all other members of the family? How do I teach basic skills like how to go out to the store and handle all that external stimuli when each outing is so difficult and disruptive? How do I instill independence in a child that has aide for almost all he does? How do I teach love and acceptance of all different children with all different abilities to my neighbors? How do I make information available to my neighbor’s concerning autism while still honoring my child’s right for privacy and respect and recognizing that he should not be in an “autism box.” He is a child first, always a child first. And how do I respectfully get the word out to those I meet in daily life about resources available, if you suspect or have concerns about your own child’s development? (I’ve walked this road, I’d love to share what I’ve learned.)

As you can plainly see, my “politics” don’t care about genetics. My politics aren’t focusing on cures. My politics focus on “making it”. My politics focus on my child and my family and my neighbors. I can’t jump out of my box and say that differing autism politics are wrong, as each angle serves it’s own purpose. But being a mom on the front lines, being a mom that L-O-V-E-S a child with autism, my focus doesn’t go too far beyond our own set of experiences. My focus doesn’t go too far beyond my child other than to be a resource to other families who are also on their own autism path.

I recently had the opportunity to help a neighbor who had developmental concerns about her young two year old. I gave her a phone number to call. That is all. And now she is on her own autism path. Through the past several weeks I have had an opportunity to be an outsider looking in as she sits through each evaluation, and learns more and more and more about what is touching her life. This past week she received her first “official” autism diagnosis for her son. Seeing her face, her body language, when she told me….Her heart was on her sleeve. And it could have been my own heart. We joined in a hug, and we each shared tears. Our own tears. Our own paths. Two paths on their own autism path, briefly touching.

These types of experiences make me realize that my autism politics really do matter, and they touch others beyond our four walls. My neighborhood politics have their place. My shoulder, my tears, my acceptance. All of these things have their own special purpose in the lives of the people I meet every single day.


BetterCell said...

Sarah..........I understand. You and your Family have my support.

mumkeepingsane said...

Very thought provoking. I love that about you.

kristi said...

I think it is great that you were able to help someone else. She has a long journey ahead, that's for sure!